The NFED is grateful to have Pilar Magoulas volunteer her expertise as a genetic counselor on our Scientific Advisory Board. Read about why she things more counselors are needed, what the best route to get genetic testing is and why she likes working with the NFED.
New Child Psychologist on SAC To Create Resources You Need
The NFED is proud to welcome Dr. Patricia Marik to our Scientific Advisory Council. Learn what drew her to the NFED and how she aspires to help families affected by ectodermal dysplasias with their emotional health.
Forty Years of Driving Ectodermal Dysplasias Research
As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!
Our NFED volunteers light the way!
Whenever the NFED has a need, our volunteers step forward and help. We want to let you know that your dedication and inspiration is essential to the work that we do—we simply cannot do it without you. THANK YOU!
How Our NFED Family Came To Be
What was it like to be diagnosed with ectodermal dysplasia in the early 1980s? NFED founder, Mary Kaye Richter, looks back at the Foundation’s humble beginnings, its first decade of accomplishments and the extraordinary people and circumstances that fueled its success.
Dr. Albert Guckes: A Dentist With a Big Heart
Back in the 1980s, a prosthodontist named Dr. Albert D. Guckes became interested in the ectodermal dysplasias. He speculated that dental implants might be a viable treatment for affected adults who were missing teeth. His landmark study would impact generations to come with what they learned. We not only thank Dr. Guckes for this study but for what he did for the next three decades to help our families.
Welcoming New Volunteers to our Board and Council
We are happy to announce that Roy Moffitt has joined the NFED Board of Directors and Dr. Beau Meyer, a dental researcher, has joined the Scientific Advisory Council.
Expanding Our Skin, ENT and Eye Expertise
We simply could not put a price tag on the value the volunteer doctors add to our Scientific Advisory Council (SAC) and our organization. We rely on their talents to lead our research program, present educational workshops at Family Conferences, write educational materials and talk with families one-on-one. They bring incredible expertise to our mission. We are honored to have added three new physicians to the SAC.